It's just one of those days...

You know the days that just seem to go wrong?

We started the day running late for school, hopped in the car, got Owen buckled in, his oxygen and feeding pump hooked up and did the backpack/waterbottle/lunchbox check. Started the car and nothing. Tried again. Nothing. Darn battery.

Carson just happened to be home this morning getting ready to chaperone Kamryn's class fieldtrip. Whew. Carson jumped me my car, then left to make it in time for the fieldtrip.

The jump didn't last and my battery died another slow death. My dad came to my rescue and we went to walmart to find out my battery was under warranty by a month. Saved myself $70!

Not so fast. My battery cable was corroded so I had to get my car to the dealership for another cable. The guy said 'thetotalis$400dollarssignhere". Whoa, whoa what? To which he replied "thecableisonly$20butthelaborand80000milecheckupwillbeincludedintheprice". Again, dad to the rescue. He got it down to $94 for an overall service, new cable and they were fixing the front grill that fell off when the hood slammed shut on my dad's head. Sorry dad. For those of you that don't know my dad, he's a sales manager for a car dealership, he knows every trick in the book.

Back home, our internet stopped working. I called Cox to which they replied "our systems are down here, but we can have a tech out in the next week "ohandthereisa$50chargetosendatechout". Um, no thanks. Turns out it was an outage in the area and internet started working a few hours later on it's own.

Did I mention Owen yanked out his NG tube when we went back to the dealership to pick up the car? It was on accident and he was devestated. When I put it back in I think I missed his stomach and it went into his lungs because he turned blue... really blue. Then I pulled it out and blood came with it. Awesome, does this day get any better?

YES IT DOES. Because at the end of the day, I get to relax at home with these two and what could be better than that?

15 Months and "Glenn"iversary

Happy 15 Months Mr. Owen!

Stats:
Weight: 22.8lbs
Height: 30" (almost)

*You can't possibly get any more funny!

*You like to be the center of attention all the time.

*You have started the underbite smile (which I have yet to capture on camera).

*You have mastered the Butt-Scoot and managed to not strangulate yourself as your twist your oxygen and feeding tubes around your neck ... yikes.

*You try really hard to do more physical activity, but you get too exhausted too quickly.

*You have stopped eating food all together lately, but it sure is fun to see how far you can throw it across the room!

*You love to play, read books, lay in bed and cuddle (our favorite) and be outside!

*"Mama", "DA", "BuBu" (sister), "Ah-Dun", and "Guuuu-Guuuu-GAAAAA" are your favorite words as of lately. Tomorrow marks the one year anniversary that we sent you off to the OR for your second open heart surgery, The Glenn. Even though we had sent you to that same OR with Dr. Pearl before, it didn't make it any easier. The Dr.'s had to put you back on ECMO and stop your heart once again so they could work on your tricuspid valve. I will never forget those long hours sitting in the family center, waiting and praying! I remember the nurse coming in to tell us that there were complications in the operating room and that you were nto doing well... "hold on to your seat, this is going to be a rollercoaster ride." I remember the knot in my stomach and tears welling up in my eyes. Dr. Pearl came in two hours later and told us that you were in your PICU room getting settled. He was worried. He said that things were 'not okay'. He left your chest and skin open so he could get in to your heart in case of an emergency. We didn't hear anything for another hour. I paced the halls waiting to come see you, I sobbed like a baby. Dr. Stock was on call that week. He told me that you were fragile and that we were taking things minute by minute. You were so very pale and puffy. You didn't look like my baby anymore. I spent the night by your side with all of the lights, moniters and commotion. You fought hard and the next morning, you were finally stable. Dr. Pearl closed your chest up ... whew. Nobody wants to see inside their babies chest and watching their heart beat.

You remained on the ventilator for a few days until you were rested. You had troubles with chylo (fatty leakage into the lungs). We stayed in the hospital three more weeks recovering from that crazy day.

You are our hero Mr Owen.

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Update on the News Story -- Fox 10 still hasn't uploaded any video of Mr. Owen's 3 spotlights. I don't know what's up. I called and ordered a DVD of all three of them and should have them shortly. I will then post the actual videos. Unless of course, I get a link before then.

News

Owen's Story aired on Fox 10 News at 5, 9 and 10. I have yet to find a link. Fox hasn't updated their "stories' online yet. As soon as I find it, you'd better believe I will post it!! Kamryn squealed with delight that Owen was on TV!

I posted donation information on the right sidebar of the blog. We are going to be having some fundraisers in the future and so I put the info there for those interested. Continue to pray and spread Owen's story because that's the best donation of all!

We are getting excited to go to Palo Alto. We will drive (not only due to oxygen restrictions, but that nasty swine flu we do not want). Since we are driving, we will have the option to spend a day or two in San Fransisco. Since I haven't been there since I was nine, I have no idea what to do while we're there. Please share some ideas for us to do!!

To end this post, I must say that I am greatful today that Owen is not crawling nor walking. Can we say DESTRUCTION!! Anything he gets his hands on he either eats or destroys. Of course I can't get upset because I am too busy trying not to laugh. That smile is going to save him many time-outs one day in the not so distant future. I'm such a softy.

Spotlight

Fox 10 just wrapped up their interview on Mr. Owen. What a fun job they have! Owen showed off as usual and especially liked being held by the reporter on air. Watch for it tonight, Fox 10 Arizona, 5pm. I'll post a link to his story as soon as it's available. I think he's going to melt some hearts! :)
We're getting ready to go to Stanford. We are excited about the new adventure ahead. The adventure is going to be difficult, exciting, scary... but well worth it all. I will post more later, Owen is exhaused from his morning in the spotlight.

Infertility

For eight long years, we suffered with secondary infertility. Kamryn was conceived, as a surprise, when I was 19 years old. After she was born, I so badly wanted her to have a sibling close in age. We started "not trying", but "not preventing". I saw myself with a few little babes close in age, going to school together, sharing friends. That was not the plan for us.

After the first year of trying, I decided it was my husbands issue.. sorry honey. Carson went a specailist and he was doing his part, so it had to be me that had an issue. I decided it wasn't a huge deal and we continued "not trying" for another couple of years. We were busy working, going to school and enjoying our silly baby girl.

By about year five of infertility, I broke down and visited the OBGYN . I was diagnosed with PCOS (Polycistic Ovarian Syndrome). The Dr. lost me when she started talking about insulin resistance and the foods I eat were causing my infertility. I immedietly switched to a protein only diet, and took my Glucophage (to help with the insulin).

Another year of this, I still wasn't conceiving. We tried a few months of clomid with no luck. My body and our love life turned into a science experiment of mapping out days on the calendar to take my temp or my progesterone. Still, no luck.

Days turned into weeks, weeks turned into months and months turned into years. I can't even begin to tell you the amount of sticks I had to pee on. NEGATIVE... each and every time. I was so frustrated, sad, angry... why could everyone else get pregnant so easily. Worse.. why did I conceive Kamryn so easily?

We decided to stop trying. Stop the monthly charting. Stop the progesterone. Just enjoy life and be okay with the amazing daughter we have.

One day, 8 years after we conceived Kamryn, we got the surprise we never expected. We were pregnant. You know the amazing blessing that we got.

My body is back to being completely irregular. I am back on the progesterone. I am back on the Glucophage. I am back to having PCOS. I know that there is a reason for it all.

In hindsight, I am thankful that we had eight wonderful years to devote solely to our daughter. She is a major help with Owen, she adores her brother. I feared they wouldn't be close due to the gap in age. I was wrong. I wouldn't change the way things turned out for us at all. I believe there is a plan for us all. I trust HIM, for he created us.

If we are meant to be a family of five, we will be. Someday.

My heart goes out to all of you that are struggling with infertility. It stinks. It's not fair. There is a plan for you, just trust HIM.

No More Bottle Caps

Just when I thought I had nothing to blog about today... Owen choked on this.

I gave him a water bottle to play with and didn't realize that he could screw the cap off. Two seconds later he was gagging and turning blue. I put my finger in his mouth to get it out (aware that this is a no-no as it can push it down further). I then did the Heimlich and he choked it up a little. Put my hand back in and got it out. Thanks for the scare Owen, no more water bottles for you Mister.

After his little escapade, I sat him down to play so I could clean up the blood and get him a drink of water. What do you know... something else right in his mouth. Apparently it didn't phase him much.

What do you do when you want a toy, but your hands are full?? Use your feet. The increase in his oral meds seems to be working. Today is the first day in weeks that he has been playful. It lasted about 30 minutes until he was ready for a nap. Oh.. and he ate a few crackers today.. awesome. So I know I updated earlier and asked that you pray for Beckham. I just read that Sofi is getting a heart today!!! Both of these heart friends are transplant patients and have major antibody issues... hmmm... sounds familiar! Say a prayer for both of them.

Deleted

Darn it. I deleted my last post when I was trying to update it. I guess I'll have to make a new one for today. SOON. I need to wait for Owen to wake up so I can get a picture. It's just not fun to read a post without a picture.

In the meantime.. pray for Beckham. He has antibody issues, unlike, but like Owen's. His antibodies are attacking his platelets. He has been through plasmapheresis, rituxin and ivig but none of it has worked yet. He is also a heart trasnplant recipient and his story is amazing.

Cardiology Visit

Owen LOVES to go to cardiology. He enjoys the EKG, insists on holding the oximeter, sticks out his arm for the blood pressure cuff, helps Dr. Stock listen to his chest, and did I mention the boy is a flirt with the staff? We avoided the dreaded scale today because he was just weighed on Friday... whew.

I knew something was off when Dr. Stock took a second glance at Owen's EKG. We never have an issue with those crazy squiggles. Owen's heart is showing some signs of being in further distress and it's starting to reflect on his rhythms. Nothing significant, but it's presenting itself. We increased the rest of his oral meds and now he is really maxed out on oral meds. The good news is, he is starting to feel a bit better. He has a little more energy and is showing a little more interest in eating. He ate two bites of bread and one bite of yogurt for lunch... there's hope.

I'm starting to think that all the issues with oxygen and travel is happening for a reason. I just have a random feeling that Stanford might keep him rather than allowing him to come home. We don't know what the next four weeks will bring, but I am preparing myself to stay. If that is the circumstance, then I would need my car. So maybe, driving is a good thing so that I will have my car. Also, I can pack a huge load of things in the back of the 4-runner that I can't pack in a suitcase and throw on an airline. Once again, I will go with the flow of things and see how they work out. It seems to be working thus far!
I am aware that these pictures have nothing to do with the post, but I had to keep the little guy entertained by taking his picture so that I could finish my lunch. Unfortunatly, 2 bites doesn't do the trick for me.

Planes, Trains and Automobiles

Things are falling into place just as I was hoping they would. The social worker from Stanford called yesterday afternoon and we had a long chat. We talked about oxygen restrictions on airlines, housing and things to do in San Fransisco. Also, we spoke about the ammenities for Kamryn if we're there long term. They have a school at the hospital that siblings can attend (it's a nice option to have).

Flying to Stanford is going to be extremely difficult and costly with Owen's oxygen. If we use the airline's oxygen (which is required to fly with them), they charge an additional $150 each way... yikes... he doesn't even have his own seat! Another airline said we can use an oxygen concentrator, but of course insurance won't pay for it and it's $80/day to rent. With airline ticket expenses for the three of us, it would cost around $600 for us to fly roundtrip. That doesn't include rental car, OR arranging for oxygen delivery at the airport when we arrive. I have a few calls into angelflights and miracleflights, but am not holding out too much hope. Something about oxygen on a non-compressed airline is a "no-no". When all else fails, we drive and make it a 12 hour road trip.
The social worker kept using the word one-way and your "stay" may be long. I then said "we're coming home right??" She gasped as if it were obvious that we were staying and said "by the looks of things, the cardiologists sounded as if they might keep Owen here!" I'm not worried yet, because they haven't seen Owen... only his inner workings.

I am still going to prepare myself that we may have to stay.

We go back to cardiology in the morning. Dr. Stock wants to see Owen again, he just gets worried about him. We increased all his meds and with it came increased puking. I will change his NG tube tonight, but I'm pretty sure that isn't the issue. Owen still only eats a bite or two a day lately...don't even think about drinking... poor guy is just too tired to eat! We skipped physical therapy today because he was falling asleep in the car on the way... he is tired 70% of the time. The rest of the time he just plays quietly. It's hard to watch him exhaust so easily.

On another note... it reached 102 today and it actually wasn't too bad. It's going to be a good summer! Unless of course we're in Palo Alto, CA.

LPCH

Guess where we are headed???

Ok, I wouldn't know by that picture either... how about this one?

Did you guess Lucile Packard Children's Hospital at Stanford? We got a call and his appointments are scheduled for May 15th. I'm really hoping after our visit with the Transplant team here, we will have enough info to make a decision regarding Owen's transplant care.

For the time being, I would like to stick with the hospitals closest to home. I have been reminded by our cardiologist here and others that no matter what, my family is still in Phoenix and I need that support nearby. Also... sister and daddy will be traveling back and forth to Phoenix and I would like to make that as convienient as possible.

I am so excited to meet the team at Stanford and hopefully Seattle (that's my next call). Seattle will primarily be our secondary transplant center. Since we will list Owen in multiple regions (Seattle is region 6, California is region 5), if a heart became available in region 5 that matched Owen... we would have to do a hospital transfer to Seattle and relocate there for transplant. That is where we have no control and we will accept things as they happen.

I'll fill you in on details as we get them. I need to figure out how to fly with oxygen now. :)

Bring it On

It's currently 95 degrees outside. We were out and about enjoying this beautiful spring day until about 1:00, when we felt it come on. It's the first real HOT day and it is sinking in...it's time to get ready for summer. Arizona is unlike anywhere else, 110 degrees is our typical summer weather. The smell of sunblock, chlorine, sweat and cooked skin. The scalding steering wheel when you get in your car. Enormous electric bills to keep the house cool. LOADS of laundry containing swimming suits and towels. Then there is the FUN in the sun, swimming all day, watermelon, icy cold drinks, flip flops and shorts.... BRING IT ON!

Cardiology and Physical Therapy

Have I mentioned that Dr. Stock is a great cardiologist? Well, he is. Mr. Owen must be listening to my phone conversations with Drs. because he got a good night sleep and woke up feeling great! I still took him to see Dr. Stock this morning and it's just what I needed to calm my fears. Owen is up to 22.5 lbs... that is 1 lb in the last 3 weeks! Thank you NG tube. Now, thanks to his weight gain, we can increase his oral meds a little and pray that it will give him the extra boost to feel better. Here are his new meds and doses (this is so I can remember)....
Captopril 4ml - 3xday
Sildenafil 1.2ml - 3x day
Aldactone 1ml - 2x day
Lasix 1ml - 2x day
Digoxin 1ml - 2x day
Asprin - 1x day

That's all of them!

Owen, Dr. Stock and I had a good chat as well. Owen promises to stay healthy and happy at home while taking his oral meds. Dr. Stock will followup with him on Wednesday of this week and very frequently thereafter, and of course, anytime! I am going to relax a little, stop worrying so much about Owen's outcome and just let things develop as they are meant to. Easier said than done.

As far as a hospital choice, I will wait for Seattle and Stanford to call us. I will continue on with plans to visit those hospital and then we will make a choice and stick with it. We're all in consensus to stop the antibody treatments for now until Owen is to a point where he NEEDS to be admitted. The chances of him getting a heart at home are slim to none, so there is really no reason to continue to treat his antibodies until necessary. Until then, we will wait at home and enjoy life!

Since Owen is feeling better, I figured we should do a little physical therapy play today...
This is what tummy time is like around here! :) Looks like a good time doesn't it? Owen has never been able to push up on his arms at all. I always blamed it on his big ol' adorable head and his tiny little body. Any guesses on when he'll start crawling?

Here is Owen working on bearing weight in those legs. The part you can't see is him hollering at me. I really don't torture him... I only have him work on this for a total of 10 seconds before he starts to scream! Then I stop.

I try to do a little bit each day with him... 4- 15 minute sessions is about all he can tolerate. I know that his motor skills are the least of his worries, but we still need to work on them. Don't let this little guy fool you... here's what he just figured out to do on his own. Can you say butt-scoot?

Decisions

Owen is tired. Owen is cranky. Owen is not himself. We have some big decisions to make and I don't know how to make them.

I got a call from the cardiologist at UCLA today. She had called Pittsburg and Seattle Children's and gave them info about Owen and his antibodies. She recommends both of these hospitals but says that UCLA can also take him on with confidence. When I asked about Stanford, she said they have sent some of their high risk kiddos to UCLA. Now I'm really confused. I asked her "if it were your son where would you go?" She said to go wherever is geographically going to be best (family, friends, support). That option is out because our whole life is in Phoenix. She then said as a parent, you have to go with your gut. Any major center is going to be great and do the best they can for Owen.

I realize that time is running out and a decision needs to be made soon. Dr. Halnon (at ucla) said that if we wanted to go somewhere else, she would do anything and everything to get his records there and help facillitate that. Pretty amazing I think.

Dr. Stock just called and is concerned. He doesn't like that Owen is not feeling right. He wants to see him at 9am tomorrow and to also keep his appointment for this Wed. I couldn't ask for a more caring cardiologist.

A decision has to be made soon. How do I choose a hospital? How do I know where to send my baby to get a new heart? I keep praying for an answer, but it hasn't come. I keep hearing, "you'll have a gut feeling, you'll know", yet I dont know. The one thing I do know is that moving forward with transplant is the right option. I have a good feeling that things will work out and I will trust that. Where to go is the one major decision that has left me sleepless, tearful and begging for guidance.

Camera

April 15, 2008

My camera isn't working. The day that Owen decides to bear weight in his legs finally. The day that he stand up against the couch all by himself.. I helped a little. I think it's time to invest in a new one. Or fix this one. Whatever. I'm just saying a new one would be nice. And HORRAY for Owen, your legs are meant to stand on!

Medical Update:

Owen is a bit crabby. His Oxygen saturations were at 70% last night so I increased his oxygen to 3/4 liter so he's up to 77%. Just got an email from our cardiologist and he's going to get Owen in this next week.

We wait to hear from the transplant facilities.

Wiped Out

Owen is wiped out. He got through about 10 minutes of physical therapy before having a complete meltdown out of exhaustion. Now he sleeps. I forget how sick he is, until days like today, when his body just crashes. Today we he will rest. Owen's medical records were just sent off yesterday to Stanford and Seattle Children's. Hopefully we'll be making a trip in the next few weeks so that we have a plan for his care. I don't enjoy waiting. Owen's heart is failing, he's maxed out on all his oral meds and we pray that he just stays stable and "okay". I was reading through Owen's medical notes from his last cardiology visit and it doesn't quite sink in until you read it on paper. "Mom is aware that ANY little sign of decreased heart function (sweating, puking, diarrhea, labored breathing, fatigue, increased need for oxygen) and we will be admitting him, administering IV medication (Milrinone) and facilitating transfer to transplant facility. " I am aware. I just don't want it to be true.

Easter

We had a wonderful Easter! Traditions start the night before when we dye our eggs.

Kamryn set up this little display for the Easter Bunny. I forgot to buy carrots, so we figured we'd give the bunny a brownie sugar rush. Word is.. he didn't complain.

Kamryn loved hunting for her basket that the Bunny hid in the shower this year. She thanks the Easter Bunny for all her goodies and we hope he'll be back next year.
Owen was completely disinterested in anything Easter.... With the exception of the chocolate egg that Kamryn gave him. The boy loves chocolate!

We went to Grammy Kathy's and Grandpa Brant's for Easter lunch. We ate, dyed eggs (again), the kids hunted for eggs, and got some easter goodies from Grammy.

Grammy K., Auntie Larissa, Connor, Rylee, Tatum and Kamryn dying Eggs.

Kamryn and Connor spent hours playing WII Fit.

We went straight to Grandpa Greg and Grandma Vicki's for some Easter desert. Kamryn and Gigi dyed MORE eggs... and Gigi's dress (yikes).
Owen isn't in many pictures because he was busy charming his way from person to person.. sneaking bites of candy... smooches... and LOTS of attention.

We love Easter! It's a time to celebrate the resurrection of Christ, spend time with family, and we like to throw in ALOT of Easter Bunny fun! Our kids are only going to be little once.

Hope you had a Wonderful Easter as well!

A Little Hannah

Questioning the new music on the blog? Kamryn and I had a little girl time this morning. The new Hannah Montana movie was great! Of course we had to come straight home and download all of the new Hannah music. I never thought that this little gal was into Hannah, but who knew I was either?

Thanks for the girl time Kamryn, it's always FUN!

Good Friday Happenings

First off -- I got a call from Stanford this morning and they haven't received any medical docs for Owen yet. Then I called the cardiology medical records dept in Phoenix and they said that they haven't sent anything out yet. It will be probably Monday or Tuesday. Seriously? Does anyone find the fact that my son's heart is failing and we need a plan important? BIG SIGH. I offered to drive to the Phoenix Branch and pick up Owen's medical docs and fedex them to Stanford and Seattle myself. I was told that the transplant coordinator has to sign off on it and she's not in the office until Monday. Hmmm... guess I'll be having a word with her then.

On top of that... I still haven't heard from UCLA, going on two weeks now... no plan of action.
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Since there is no school today, Kamryn is home and Owen mentioned something about wanting to chill in his diaper all day at home. I obliged. I got the camera out and took some pics of Mr. Owen... being Mr. Owen. Too bad my camera took bummer pictures again, more on that later.

Owen started the day with some yoga stretches. He's been doing this during the day, he's building up his stamina for crawling... someday.

After doing his one of his many physical therapy sessions with the ball, he started kissing it. He's probably thinking thank you, the torture has ended.
He then moved on to lunch and decided that he'd chew on the port of his NG tube while the pump did it's job of filling his belly. He won't know what to do when that tube is gone, he's had it since birth.

Then he decided to do a little stretching... arms above the head. Sister thinks it's hilarious that Owen can't raise his hands above his head, they stop at the mohawk. His head is big, arms are short and it's oh so adorable!

Finally, this is how Kamryn and Megan spent the day off school. Wii ski, barbies, rice krispy treats, crafts... the day couldn't be more relaxing.

Okay, back to the topic of cameras. I have a Canon point and shoot and I don't like the quality of pictures it is taking.. fuzzy, blurs with movement, ect. I delete too many pictures that would be Fabulous if the quality was good. I'm on the hunt for a new camera. I need opinions on what you use, what you like, what works good. I definelty want an SLR, Canon is preferred. I have researched but I see Rebel, 40D, 50D, 5D... oh and the options for lenses... where do I start??

Trying a New Look - Updated

**UPDATED**
Okay... the new blog design is growing on me and I actually like it! Check out the link on the upper-right corner for a link to check out Owen's story. It'll take you back to the beginning of his heart journey to today. ENJOY!
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Original Post:

Ok.. I have been working on a new blog look ALL day and I don't like it. Hmmmm...

Enjoy it while it's here, because I'm going to change it yet again. Later. After I spend some time with my babes.

No medical updates.. yet.

We have some fun easter stuff planned this week... I should have something fun to post about then.

Gotta run.. Owen bit the desk and now he's in tears.

Waiting

I spoke with our Phoenix transplant coordinator this morning and gave her the rundown of my crazy week, calling transplant centers and the information I've gathered regarding antibodies. I filled her in on my concerns with UCLA and she agreed with me. She said that they send alot of patients to LA for transplants (since they don't do them here) and the post-transplant communication with UCLA has been difficult. That's what I was worried about.

We talked for a while and she agreed to have Owen's records sent out to Stanford and Seattle Children's. Both hospitals agreed that they feel this is an urgent case and that they will try to schedule a transplant evaluation sometime in April.

I would like to coordinate the visits to both hospitals so that we can go on ONE long vacation, rather than two. It does appear that we will be flying to both hospitals as Stanford is a 12 hour drive, but Seattle is a 28 hour drive (yuck). The next trick is finding an airline that allows us to travel with oxygen ... ha .. any ideas???

I'm excited and nervous about our next step. For now... we wait.

Kickin' Back

We have having a wonderfully, relaxing weekend!

Gotta love the tummy, the tongue and the tugging of his hair!

Donate Life

I have offically spoken with EVERY single heart transplant center in the nation. I am amazed at the quality of healthcare we have in our nation. I am also grateful that we have such wonderful insurance to pay 100% of Owen's transplant medical costs.

When we first learned that Owen would need a transplant, we immedietly thought, let's do this as close to home as possible. We have since learned that Owen is a high risk case, the chances of him getting a perfect heart are slim, and we may have to try some risky things to work around his antibody issue. His antibody issue changes things.

I have narrowed our options down to Stanford, Seattle, Pittsburg or Boston. I feel extremely confident in these centers at this point. Not only will they list Owen for that perfect heart (a negative crossmatch), but they will pre-treat his antibodies in the meantime, and if time is running out they will take a heart with great function (even if it's a positive crossmatch) and use agreesive treatments to help him fight rejection. All four centers have had good outcomes, worked on many high risk antibody cases, and showed genuine concern for Owen.

We have not ruled out UCLA (our exisitng heart center). My confidence in them has been shaken and we are still planning a trip to visit with them. I have a lot of questions for their entire team and through talking with all the other transplant facilities.. I have developed SO many more concerns.

I have requested Owen's record be sent to all four of the hospitals above. They will review Owen's situation, talk about it with the entire team of Dr.'s and get back to us. So now we wait.

Hey... did you know that April is National Donate Life Month?? I didn't either. If you're not registered to be a donor... click on the picture and register.
I hate to think that in order for Mr. Owen to have a chance at life... he will need a heart. A heart that comes from a child under 44lbs. A child whose life will have to end way too early.

Antibodies and Transplant Centers

I am learning more than I ever wanted to know. I spent the whole of yesterday and today on the phone with every pediatric transplant hospital across the country. Thank You for all the suggestions!

My biggest finding ...
Owen's antibody issue is not seen, treated and/or successfully transplanted at many centers. It is a highly risky situation to be in and he has already shown that his antibodies are going to be difficult to treat. It is a lot more rare than I had orginally assumed to have these type of highly sensitized antibodies (or at least that's what I've been told by Drs.).

One thing is certain... we have several options.

#1. Pre-treat Owens antibodies with chemo and immunoglobulins and pray it starts to work.
#2. Have Owen listed for a PERFECT match in the meantime ... yes, this can happen!
#3. If Owen gets too sick, with time running out, we can accept a okay match and fight rejection after the transplant. This would be risky.

Some hospitals won't pre-treat, some won't give him a heart no matter if time is running out unless it's a perfect match, some won't do anything but option #2. At this point, we are looking for a hospital that will do all three and one that has DONE all three in the past. Thought this would be easy... it's complicated.

The one hospital I am really eager to speak with is St. Louis Chldren's, totally random. I have received recommendations to them from almost every single transplant coordinator I have spoken with. Apparently, they forgive the antibody issues when listing for a heart. NOT something that I would be in favor of... BUT, it is something to look into. I would like to know what methods they do use to treat rejection and also what kind of success they have with their treatments. Also, they are centrally located in the country so a heart could come from far west to far east... which obviously opens up the donor pool.

We don't know what the plan is for Owen yet. We just have a feeling that things will be okay. Owen and I had a little talk today and he smiled, raised his brows and then gave me a smooch.

Everything is going to be okay.

Not Good News

**UPDATE**
Thank you all for your comments thus far... really helpful.. keep them coming!

I have spoken with some fabulous nurses from Stanford, Seattle Childrens, Texas Childrens, and waiting to hear back from more. It's still the same bad news when it comes to antibodies. Some don't pre-treat, they wait for the perfect match and we PRAY that it comes. Other's pre-treat more agressively than other. Carson wants to check out Boston Childrens and some in Pennsylvania as well. It's all going to come down to parent's intuition. What the best options are for Owen. THANKFULLY, we have time on our hands and we continue to pray for more. I hope to spend less time on the phone tomorrow and more time PLAYING. What a stink of a day!
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I have had an aweful feeling in the pit of my stomach all day.

It started with me calling the transplant coordinator through our insurance to make sure they were going to cover Owen being seen at yet another transplant center. I expressed my concerns with UCLA, to which she immedietly called them. Surprise... I got a return call from UCLA just 5 minutes later. Not sure why it took an angry insurance provider to get a return call.

First is was the transplant coordinator asking if I wanted the transplant cardiologist to call me back with information... um yeah?

Dr. Halnon called immedietly after I hung up with the coordinator. She said she hasn't called because it's only bad news. All of the chemo and immunoglobulin treatments did NOTHING for Owen's antibodies. They didn't even budge a bit. Being the optimist that I am... I said "why not try it again?" OR "we can maybe try cellcept?"

The reply that she gave was "OH, do you want to try the treatments again? I can also sent a request for a perscription of cellcept to be written by your cardiologist if you want to TRY that. We haven't seen much success with either treatments, but it doesn't mean Owen won't be the first!"

She proceeded with asking me if I'd considered maybe selecting a transplant facility in the midwest? With Owen's antibodies, he would need almost an exact cross match right now, which means he definetly needs a caucasian donor .. almost a twin. So she suggested that the midwest may have a larger caucasian donor pool and his chances of getting a heart would maybe increase. The majority of donors at UCLA are hispanic or african american. She also stated that some transplant facilites don't run cross matches on antibodies, so they'll transplant any available heart and treat rejection after the fact.... no thanks.

The antibodies he has are common antibodies. Only a heart out of about 10% of the donor pool would be acceptable for him. Since he didn't show signs to the initial antibody treatments, it's discouraging to think that after he gets a heart, that the treatments to prevent rejection of the heart will work. Another option she gave was to simply treat his heart failure and forget about transplant. I don't like this option.

She said she would speak with their immunologist to get more ideas. She will also contact some other transplant centers to find out what their ideas are.

After our 45 minute phone call, I hung up feeling discouraged, and VERY DETERMINED! I know that UCLA is the "bad guy" and had to deliver the news. I also can't help but to listen to my instincts. There has to a transplant facility that has a little more optimistic news for me. Someone that sounds hopeful. A team that has dealt with this in the past and had successful outcomes. I will call every transplant facility and ask them how they deal with antibody treatments, what their opinons are and I will go anywhere!

I need your help!! Tell me your experiences with hospitals, transplants, antibody treatments.. whatever you know or have experienced. Good or bad. Anywhere in the US. At this point, I will do anything!!

Spread the word. Thank you.